REFUSING AND WITHDRAWING MEDICAL TREATMENT

Decisions to withhold or withdraw medical treatment are now commonplace, and both legal and ethical support for such decisions is well established. Even in the case of medical interventions necessary to sustain a patient’s life, it is generally acknowledged that ethical and legal backing exists for decisions to forgo treatment and allow a patient to die. At the same time that law and ethics have sought to protect the patient’s or surrogate’s refusal of medically beneficial interventions, patient and family requests for nonbeneficial treatments have generally not been recognized by ethical standards of the professions, health care institutions, or the courts.

Historical background

For most of its long history, medicine was guided by the Hippocratic ideal, which places emphasis on the health professional’s special knowledge, training, and experience that is used to direct the course of patient care. The doctor gave the orders and the good patient followed these orders, knowing that a person with superior knowledge and skills was working to promote his or her interests. With the advent of new medical technologies during the latter half of the twentieth century, it was becoming clear that the new interventions medicine had to offer, such as intensive care units, assisted ventilation, kidney dialysis, and organ transplantation, did not always have happy outcomes. Patients and families were no longer comfortable with physicians maintaining authority over patient care decisions. Increasingly patients challenged the foundations of Hippocratic ethics in important respects. In particular, the autonomy of the medical profession to determine what constitutes harm and benefit to the patient was called into question.

The social and cultural milieu of the 1960s, a time of rebellion against formal authority in many areas, encouraged such questioning. During this time the civil rights movement, the anti-Vietnam War movement, the national debate about abortion, and the beginnings of the feminist movement of the 1970s and 1980s caused large numbers of people to question paternalism in many spheres of life. It was against this historical backdrop that the 1970s and 1980s witnessed a series of highly publicized legal and ethical cases in which patients or families challenged the treatment recommendations of physicians and hospitals. In these cases the patient or family sought to withdraw treatments required to keep a patient alive over the objections of the hospital or health care team. The health care team or institution either felt it was ethically improper to withhold or withdraw treatment, or wanted legal immunity before doing so. In the 1976 case In re Quinlan, the family of Karen Ann Quinlan, a twenty-one-year-old patient in a persistent vegetative state, requested that she be taken off the respirator, and that all extraordinary procedures used to keep her alive be discontinued. Over the objections and misgivings of the institution where Ms. Quinlan was treated this finally occurred following a 1976 decision of the New Jersey Supreme Court. Ms. Quinlan survived in a persistent vegetative state for 10 years, dying on June 11, 1985. The court ruled that Karen Quinlan’s father could assert a right of privacy on Karen’s behalf. It also held that the institutions and providers caring for Karen were immune from criminal liability even if the removal of medical treatment resulted in her death.

Like the family in Quinlan, families and/or patients in a series of later cases sought legal backing for withholding and withdrawing treatment. These challenges to medical authority established that the patient, or the family speaking on the patient’s behalf, had the authority to stop medical treatments over the objections of the health care team or the institution caring for the patient. The courts developed specific rules for legally justifying withholding or withdrawing treatments during this time. In 1977 the Supreme Judicial Court of Massachusetts held in the Saikewicz case that decisions to withhold or withdraw life-prolonging treatment from terminally ill, incompetent patients must be made according to the test of ‘‘substituted judgment.’’ Substituted judgment requires that surrogate decision makers act in accordance with the patient’s wishes as they were expressed when the patient was competent.

Further legal backing for the standard of substituted judgment came in Brophy v. New England Sinai Hospital, Inc. In Brophy, the Supreme Judicial Court of Massachusetts authorized removal of the artificial feeding tube from an incompetent patient in a persistent vegetative state. It held that the ‘‘substituted judgment’’ of an incompetent person in a persistent vegetative state to refuse artificially administered sustenance must be honored.

Like the ‘‘right to die’’ cases that preceded it, the case of Nancy Cruzan lent support to patients’ and families’ wishes to discontinue medical treatment. In Cruzan the family of a twenty-five-year-old Missouri woman who never regained consciousness following an automobile accident asked the doctors caring for her to remove the feeding tube so that she could die in peace. Ms. Cruzan’s father asserted that his daughter would never have wanted to live in her present state. Despite the family’s wishes, doctors and the hospital caring for the patient refused to withdraw the feeding tube without a court order. Although the Missouri Supreme Court declared that the state had an ‘‘unqualified’’ interest in life, the court also ruled that it would have allowed withdrawal of Nancy Cruzan’s feeding tube if she had provided others with ‘‘clear and convincing evidence’’ that she would not have wanted to be kept alive in a persistent vegetative state. The U.S. Supreme Court upheld Missouri’s right to apply a ‘‘clear and convincing’’ standard for evidence of Nancy Cruzan’s wishes.

Whereas during the 1970s and 1980s patients and families typically sought to withdraw or withhold medical treatments, during the 1990s patients and families more often wished to ‘‘do everything possible’’ for a loved one in situations where health care professionals or institutions judged that such treatments were nonbeneficial or ‘‘futile.’’ This trend is evident, for example, in the 1990 case of Helga Wanglie. Mrs. Wanglie was eighty-five years old when she tripped on a rug and fell, breaking her hip. During hospitalization, she developed respiratory failure requiring her placement on a mechanical respirator. Subsequently she suffered cardiac arrest and received emergency resuscitation. Although she survived the arrest, she never regained consciousness, and eventually was diagnosed as being in a permanent vegetative state. When asked to consider withdrawing life-support measures, including the mechanical respirator, Mrs. Wanglie’s family refused. Physicians recommended withdrawing life-sustaining treatment because it was not benefiting Helga Wanglie. Yet the family believed that life should be maintained as long as possible, no matter what the circumstances, and asserted that the patient shared this belief.

A series of subsequent cases demonstrated patient or family requests for nonbeneficial or futile treatment. Such cases represent heightened expectations among patients and the public at large about what medicine can accomplish. Widespread concern arose among health professionals about the ethically inappropriate use of medical technologies. Professional organizations and health care institutions responded by establishing standards and policies limiting physicians’ obligations to offer or continue interventions that are contrary to standards of the health care professions.

Although courts have consistently upheld a right to refuse life-sustaining treatments, they generally distinguish between the patient’s or surrogate’s right to refuse treatment, on the one hand, and the patient’s right to demand specific treatments from physicians and hospitals, on the other hand. The patient’s right to privacy encompasses the right to be left alone, but does not provide legal backing for patients or families to obtain specific treatments against the recommendations of the health care team, or of the professional or institutional standards for care.

The ethics of refusing and withdrawing treatment

Just as the aforementioned cases facilitated development of professional, institutional, and legal standards for withholding and withdrawing care, so they also sparked continued debate over the ethical basis for forgoing treatment. Ethical reasons for withholding and withdrawing medical treatments can be usefully grouped under three general headings. First, the ethical principle of autonomy implies respecting the wishes of a competent patient who refuses medical interventions. Patients express autonomous wishes in a variety of ways. At the time treatment is offered, a competent patient may refuse it. Or at some prior time, a now incapacitated patient may have made a reasoned decision that certain interventions should not be provided. Often, patients express such a preference through a directive to physicians (living will) that provides both ethical and legal support for respecting the patient’s competent choices. Alternatively, a decision may be made by others who claim to represent the wishes of the now incompetent patient. Here the ethical mandate to respect patient autonomy corresponds to the legal requirements of substituted judgement established in Brophy v. New England Sinai Hospital.

A second ethical basis for forgoing medical treatment is the ethical obligation to promote the patient’s good and avoid harm to the patient. There are at least two ways in which principles of beneficence and nonmaleficence give ethical underpinning to withholding or withdrawing treatment. On the one hand, a surrogate decision maker may decide to forgo medical interventions because this is considered to be in the patient’s best interest. On the other hand, benefit is also at stake when treatment is forgone because the health care team judges that treatment is futile and provides no medical benefit to the patient.

A third ethical basis for forgoing medical treatment appeals to the ethical standard of justice. Justice arises in situations where medical resources are scarce or the dollars to pay for them are limited. In such cases justice furnishes an ethical reason for rationing beneficial care to particular patients; health care dollars or resources can be put to better (more just) use elsewhere in the health care system. Unlike arguments that find their source in ethical principles of autonomy, beneficence, or nonmaleficence, arguments appealing to justice generally spring from health care policies that seek to provide the best care to a population of patients. Support for applying particular justice rules in the clinical setting depends upon establishing that particular instances of health care rationing are part of a larger system of rules for distributing health care that itself meets ethical standards of justice.

Summary

Decisions to withhold or withdraw medical treatment will continue to attract widespread attention in scholarly and public policy discussions. Legal and ethical cases provide the basis for developing standards for settling disputes between patients and families, on the one hand, and the health care team or institution, on the other hand. Increasingly, legal and ethical guidelines support the patient’s right to be left alone while limiting the patient’s right to request specific treatments that run contrary to standards of the health care professions. In law and ethics, patient privacy and autonomy protect the patient’s right to refuse or withdraw treatment. At the same time, legal and ethical support for patients’ requesting futile interventions has generally not been forthcoming.

Nancy S. Jecker

See also Advance Directives for Health Care; Age-Based Rationing of Health Care; Autonomy; Competency; Death and Dying; Euthansia and Senicide; Suicide and Assisted Suicide, Ethical Aspects.

BIBLIOGRAPHY

American College of Chest Surgeons/Society of Critical Care Medicine Consensus Panel. ‘‘Ethical and Moral Guidelines for the Initiation, Continuation and Withdrawal of Intensive Care.’’ Chest 97 (1990): 949.

American Medical Association, Council on Ethical and Judicial Affairs. ‘‘Guidelines for the Appropriate Use of Do-Not-Resuscitate Oders.’’ Journal of the American Medical Association 265 (1991): 1868–1871.

American Medical Association, Council on Ethical and Judicial Affairs, Medical Futility in End of Life Care. Located at http://www.amaassn.org/meetings/public/i96/summary/

American Thoracic Society. ‘‘Withholding and Withdrawing Life-Sustaining Therapy.’’ Annals of Internal Medicine 115 (1991): 478.

Annas, G. L. ‘‘Reconciling Quinlan and Saikewicz: Decision Making for the Terminally Ill Incompetent.’’ American Journal of Law and Medicine 4, no. 4 (Winter 1979): 367–396.

Capron, A. M. ‘‘Baby Ryan and Virtual Futility.’’ Hastings Center Report (March–April 1995).

Greenhouse, L. ‘‘Court Order to Treat Baby Prompts a Debate on Ethics.’’ New York Times, 19 February 1994.

In the Matter of Karen Quinlan: The Complete Legal Briefs, Court Proceedings, and Decisions. Arlington, Va.: University Publications of America, 1975.

Johnson, S. H.; Gibbons, V.; Goldner, J. A.; Wiener, R. L.; and Eton, D. ‘‘Legal and Institutional Policy Responses to Medical Futility.’’ Journal of Health and Hospital Law 30, no. 1 (1997).

Miles, S. H. ‘‘Informed Demand for ‘Nonbeneficial’ Medical Treatment.’’ New England Journal of Medicine 325 (1991): 512–515.

Quinlan, J., and Quinlan, J., with Batelle, P. Karen Ann Quinlan. New York: Doubleday, 1977.

Schneiderman, L. J., and Jecker, N. S. Wrong Medicine: Doctors, Patients, and Futile Treatment. Baltimore: John Hopkins University Press, 1995.

Schneiderman, L. J.; Jecker, N. S.; and Jonsen, A. R. ‘‘Medical Futility: Its Meaning and Ethical Implications.’’ Annals of Internal Medicine 112 (1990): 949–954.

Society for the Right to Die. ‘‘Brophy v. New England Sinai Hospital Inc. Brief Amicus Curiae, Society for the Right to Die, Inc. on Behalf of Appellant.’’ Journal of the American Geriatrics Society 35, no. 7 (July 1987): 669–678.

Solomon, M.; O’Donnell, L.; Jennings, B.; Guilfoy, V.; Wolf, S.; Nolan, K.; Jackson, R.; Koch-Weser, D.; and Donnelley, S. ‘‘Decisions Near the End of Life: Professional Views on Life-Sustaining Treatment.’’ American Journal of Public Health 83, no. 1 (1993): 14–23.

CASES

Bryan v. Rectors and Visitors of the University of Virginia, 95 F. 3d 349 (4th Circuit, 1996).

Cruzan v. Director, Missouri Department of Health, 110 S. Ct. 2841 (1990).

Gilgunn v. Massachusetts General Hospital, no. 92-4820 (Mass. Super. Ct., Suffolk County, 21 April 1995). Reported in Gina Kolata, ‘‘Withholding Care from Patients: Boston Case Asks, Who Decides?’’ New York Times, 3 April 1995, p. A1.

In re Baby K, 832 F. Supp. 1022 (E.D. Va. 1993), aff’d, 16 F.3d 590 (4th Cir. 1994).